Cea going up but still normal range

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  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    jen2012 said:

    Thanks Phil - been thinking

    Thanks Phil - been thinking of you, glad to see you posting and doing well!

    Hubby's onc said the same thing about having patients whose CEA has gone up but they haven't found the cancer.   It's enough to make you crazy.    It just kept going up by .1 from surgery until August (.5, .6, .7, 8) and then Sept was 1.9.  Just seemed like a big jump all of a sudden and I'm hoping it's from his back pain (inflammation?)

    Now I know what AA means about her posts not going in the right place!  grrrrr!

    what we did

    Between large scale vitamin D3, anti-arthritis supplements and celebrex, my wife got rid of a lot of joint and bone pains.  Has anyone ever tested your husband's blood levels of vitamin D?  Gross deficiency in stage IV CRC is very common and chemo makes it worse.  My wife needed over 12,000 iu of vit D3 per day while on mild chemo just to break even; she's been on 25,000-40,000 iu D3 with special K and minor monitoring for ~2¾ years.   In the face of a rising CEA curve, we added repeated tests like CA19-9, LDH, GGT, hsCRP, fibrinogen, PT-INR.  We've checked D-dimer, AFP and CA72-4 once at critical points to identify possible surprises.

    A lot of "Olymphians" with distant lymph nodes, like your husband's para aortic lymph nodes,  have had low CEA and use CA19-9, too.   Even with low CEA, a clear bimonthly CEA trend upward over 4½ months long is likely significant and we move harder and faster on scans, tests and interviews (wife always on low dose chemo and therapeutic items, we insisted on a very successful second operation to remove a para aortic LN cluster previously left in).       

  • jen2012
    jen2012 Member Posts: 1,607 Member

    Hey! How come your "****" was ok

    but my "b-i-t-c-h-i-n-g" was not?

    CSN is discriminating in favor of poop-related cuss words!

    I see you found a way around the rules :)...it is funny what is ok and what isn't.

    Yes you did freak me out a bit but that's ok. Knowledge is power right? He had a pet scan in march...before that I think Nov. I think shes planning another in Nov but maybe we can get it a little sooner. Thanks AA...I think he (and I) want to believe its nothing but that's really hard with the stage 4 diagnosis..as you know.
  • jen2012
    jen2012 Member Posts: 1,607 Member
    tanstaafl said:

    what we did

    Between large scale vitamin D3, anti-arthritis supplements and celebrex, my wife got rid of a lot of joint and bone pains.  Has anyone ever tested your husband's blood levels of vitamin D?  Gross deficiency in stage IV CRC is very common and chemo makes it worse.  My wife needed over 12,000 iu of vit D3 per day while on mild chemo just to break even; she's been on 25,000-40,000 iu D3 with special K and minor monitoring for ~2¾ years.   In the face of a rising CEA curve, we added repeated tests like CA19-9, LDH, GGT, hsCRP, fibrinogen, PT-INR.  We've checked D-dimer, AFP and CA72-4 once at critical points to identify possible surprises.

    A lot of "Olymphians" with distant lymph nodes, like your husband's para aortic lymph nodes,  have had low CEA and use CA19-9, too.   Even with low CEA, a clear bimonthly CEA trend upward over 4½ months long is likely significant and we move harder and faster on scans, tests and interviews (wife always on low dose chemo and therapeutic items, we insisted on a very successful second operation to remove a para aortic LN cluster previously left in).       

    vit d
    Tans... last vit d test was August. It was low 30s..low side of normal. He is going to start taking hit d again since we aren't getting much sun now. I asked onc about ca 19-9 and she said they don't test for that in Crc. I suppose I could push for it ...wonder if the ins will pay for it.

    He has had disc issues in the past and he thinks that's what this is but its hard for me to relax and agree.
  • jen2012
    jen2012 Member Posts: 1,607 Member
    danker said:

    CEA

    Quit worrying about CEA numbers

     and go on vacation.  Cancer does not rule you life.  Only if you let it!!!

    thanks
    Thanks Dan..he cant go anywhere and enjoy it until the back is better. We are hoping early Nov...before reversal surgery.

    I really wish I could ignore the climbing numbers but its hard. As Chelsea said I'm afraid of having regrets. We've been together forever...he was my prom date....its just sucky how much anxiety this has brought on. I know its the stage 4 prognosis. Hes had cancer before..was treated and we moved on and never gave it much thought. But there really are not that many stage 4 folks around to tell about it many yrs later..and I'm so thankful for the ones that do share their stories. Our baby just turned 2 and I don't want to raise him alone.
  • tanstaafl
    tanstaafl Member Posts: 1,313 Member
    jen2012 said:

    vit d
    Tans... last vit d test was August. It was low 30s..low side of normal. He is going to start taking hit d again since we aren't getting much sun now. I asked onc about ca 19-9 and she said they don't test for that in Crc. I suppose I could push for it ...wonder if the ins will pay for it.

    He has had disc issues in the past and he thinks that's what this is but its hard for me to relax and agree.

    blood tests

    I asked onc about ca 19-9 and she said they don't test for that in Crc.

    Usually true, and for insurance too, although our ins will pay for hospital labs (3-5 x higher) with the insurance dr's signature. For low CEA, this answer is a common indication of a dr's limited medical insight on global literature.   I shopped hard for a low cost lab with new equipment,  and we mostly pay cash. The inflammation is more likely to affect serum CA19-9 and some other values than CEA.   The other tests, LDH,  hsCRP (or ESR), fibrinogen and maybe D-dimer are worth asking about.   

    Testing extra assays, once or occasionally, kind of a blood scan, might you help identify anomalies, opportunities and surprises.  I've learned the hard way that we (usually) can't go retake missing blood data but the old pathology (fixed tissue) samples from surgery can be re-stained.   That said, the low CEA probably means late (post surgical) cimetidine isn't useful right now.  The real issue is whether those lymph nodes are enlarged and what treatments would work best.

  • Phil64
    Phil64 Member Posts: 838 Member
    jen2012 said:

    I see you found a way around the rules :)...it is funny what is ok and what isn't.

    Yes you did freak me out a bit but that's ok. Knowledge is power right? He had a pet scan in march...before that I think Nov. I think shes planning another in Nov but maybe we can get it a little sooner. Thanks AA...I think he (and I) want to believe its nothing but that's really hard with the stage 4 diagnosis..as you know.

    MRI
    In my case BOTH CT and PET Scans were showing normal / no cancer. Only MRI of liver showed tumors in the liver. Now my scanning includes CT, PET, and MRI of abdomen/liver.

    When they did finally find tumors in liver initial MRI showed two larger tumors and three smaller tumors, although the smaller ones were "inconclusive."

    After four rounds of FOFIRI & Erbitux the new MRI only showed two tumors.

    Moral of the story?

    All imaging technology is fallible.

    Try to use ALL possible imaging technology to have best chance of knowing what is going on.

    FYI... The Tumor Board at U of Michigan Cancer Center were all flabbergasted that CT didn't show tumors in liver.
  • jen2012
    jen2012 Member Posts: 1,607 Member
    Phil64 said:

    MRI
    In my case BOTH CT and PET Scans were showing normal / no cancer. Only MRI of liver showed tumors in the liver. Now my scanning includes CT, PET, and MRI of abdomen/liver.

    When they did finally find tumors in liver initial MRI showed two larger tumors and three smaller tumors, although the smaller ones were "inconclusive."

    After four rounds of FOFIRI & Erbitux the new MRI only showed two tumors.

    Moral of the story?

    All imaging technology is fallible.

    Try to use ALL possible imaging technology to have best chance of knowing what is going on.

    FYI... The Tumor Board at U of Michigan Cancer Center were all flabbergasted that CT didn't show tumors in liver.

    nothing is easy huh?
    Thanks Phil. Having been thru radiation for tc he is hesitant to have lots of pet scans...and I'm nervous about what could sneak up on us. He tells me I need to have more faith and trust.
  • jen2012
    jen2012 Member Posts: 1,607 Member
    tanstaafl said:

    blood tests

    I asked onc about ca 19-9 and she said they don't test for that in Crc.

    Usually true, and for insurance too, although our ins will pay for hospital labs (3-5 x higher) with the insurance dr's signature. For low CEA, this answer is a common indication of a dr's limited medical insight on global literature.   I shopped hard for a low cost lab with new equipment,  and we mostly pay cash. The inflammation is more likely to affect serum CA19-9 and some other values than CEA.   The other tests, LDH,  hsCRP (or ESR), fibrinogen and maybe D-dimer are worth asking about.   

    Testing extra assays, once or occasionally, kind of a blood scan, might you help identify anomalies, opportunities and surprises.  I've learned the hard way that we (usually) can't go retake missing blood data but the old pathology (fixed tissue) samples from surgery can be re-stained.   That said, the low CEA probably means late (post surgical) cimetidine isn't useful right now.  The real issue is whether those lymph nodes are enlarged and what treatments would work best.

    Tans...the surgeon did remove 2 or 3 para aortic nodes. He wasn't sure they were the same ones that lit up but they didn't light up again since.
  • PatchAdams
    PatchAdams Member Posts: 271
    jen2012 said:

    thanks
    Thanks Dan..he cant go anywhere and enjoy it until the back is better. We are hoping early Nov...before reversal surgery.

    I really wish I could ignore the climbing numbers but its hard. As Chelsea said I'm afraid of having regrets. We've been together forever...he was my prom date....its just sucky how much anxiety this has brought on. I know its the stage 4 prognosis. Hes had cancer before..was treated and we moved on and never gave it much thought. But there really are not that many stage 4 folks around to tell about it many yrs later..and I'm so thankful for the ones that do share their stories. Our baby just turned 2 and I don't want to raise him alone.

    I tend to worry about CEA

    The slightest 'move upward' will freak me out.  My CEA ran 3.4 (high normal of 3.9) for almost 3 years. Went up to 4 then 6.4 with a liver met.  After resection it was 2.1, 2.4 and 2.9 over 12 months with clear PET's and CT's.  Again, 3.9 is the norm for my lab.  STILL scares me poopless! 

     

    This past week I read that an underactive thyroid causes elevated CEA readings.  Add that to skin infections/ inflamations, diverticulitis, polyps (could this include severe hemmerhoids?) ,  obstruction in the bowel (does this include constiptation???),  chest colds, COPD, age, fibrocystic breasts......  

     

     

  • jen2012
    jen2012 Member Posts: 1,607 Member

    I tend to worry about CEA

    The slightest 'move upward' will freak me out.  My CEA ran 3.4 (high normal of 3.9) for almost 3 years. Went up to 4 then 6.4 with a liver met.  After resection it was 2.1, 2.4 and 2.9 over 12 months with clear PET's and CT's.  Again, 3.9 is the norm for my lab.  STILL scares me poopless! 

     

    This past week I read that an underactive thyroid causes elevated CEA readings.  Add that to skin infections/ inflamations, diverticulitis, polyps (could this include severe hemmerhoids?) ,  obstruction in the bowel (does this include constiptation???),  chest colds, COPD, age, fibrocystic breasts......  

     

     

    Thanks Patch - so good to

    Thanks Patch - so good to have folks who get it.  He actually does have an underactive thyroid and has been on meds for it for a long time...but he's also gained some weight over the last few months and I wonder if his dose needs adjusting.  Thanks for mentioning that!

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    jen2012 said:

    nothing is easy huh?
    Thanks Phil. Having been thru radiation for tc he is hesitant to have lots of pet scans...and I'm nervous about what could sneak up on us. He tells me I need to have more faith and trust.

    The rads worry me a bit too,

    but then my doctor pointed out that cancers caused by treatment tends to show up about 30 years down the road (and that's talking about actual radiation tx, not just scans, which have a lot less of a kick).  I figure if I'm still here in 30 years to develop something new, it was worth it.

    And again, I re-read my comment, and I really didn't mean to be sounding the alarm quite so loudly!  I just had such a close (and avoidable) call myself that I get a little worked up when I read something that sounds similar (even if it's probably not).

  • jen2012
    jen2012 Member Posts: 1,607 Member

    The rads worry me a bit too,

    but then my doctor pointed out that cancers caused by treatment tends to show up about 30 years down the road (and that's talking about actual radiation tx, not just scans, which have a lot less of a kick).  I figure if I'm still here in 30 years to develop something new, it was worth it.

    And again, I re-read my comment, and I really didn't mean to be sounding the alarm quite so loudly!  I just had such a close (and avoidable) call myself that I get a little worked up when I read something that sounds similar (even if it's probably not).

    No worries AA - at least I

    No worries AA - at least I don't feel like I'm worried for nothing.  We see the Onc in 2 weeks.

    Unfortunately this cancer came 12 years after radiation for my hubby.  It was kind of funny that the onc and surgeon didn't think this was caused by previous radiation, but the radio onc we met with said it most likely was - without hesitation, as did a friend of mine that is a urologist.